A guide to the
best and most popular English-language pancreatic cancer websites for information and support I could find.

Please note that I have stopped adding new entries to this website as of 2011 due to my ageing eyes and the need to do some other things in life while time permits. I've kept the site online, as based on past experience, a plethora of the web sites I've listed here will continue to be good sources of info and support for years to come, as their creators or owners continue to improve them.

This is a summary of the best websites I could find around
the world for pancreatic cancer, both for general information
(symptoms, treatment options, research, etc) and for forums
(message or discussion boards) and other kinds of support. And
for those living in Australia there is information about
Australian websites here.

If you are looking for information on pancreatic cancer and
its treatment, one of the best places to go is the website of
the U.S. Government's National Cancer Institute at www.cancer.gov. The section devoted
to pancreatic cancer gives an easy to read and easy to understand
description of what pancreatic cancer is, how it is diagnosed,
treatment options, descriptions of treatments, and more.

To locate the section on pancreatic cancer, go to their
home page, find the heading "Types of Cancer"; and click on "Pancreatic Cancer"
under the heading Common Cancer Types, or click on the link "All Cancer Types" and find it in the "A to Z List of Cancers".

The organisation Pancreatica.org "Helping Patients and Physicians Create
Optimal Treatment Strategies" has one of the few websites on the
net devoted to pancreatic cancer, and it's a must to visit. The
address is www.pancreatica.org. Their
website is oriented towards scientific treatments and links to
research and treatments. They include "The world's largest
listing of clinical trials for pancreatic cancer Find a clinical
trial, review cancer research and emerging cancer treatments" and
"Information from journals, clinical trials, press releases and
news sources Orientation: new pancreatic cancer treatment
findings" and an FAQ "Answers to questions about pancreatic
cancer: covers such areas as definitions, pancreatic cancer
stages, symptoms, diagnosis, prognosis, medical treatment, the
Whipple procedure surgery, support and other related
issues".

The Johns Hopkins University runs a pancreatic research center. They say
"No other medical center in the world treats as many patients for
pancreatic cancer as the Sidney Kimmel Comprehensive Cancer
Center at Johns Hopkins". Within this Center is the Sol Goldman Pancreatic
Cancer Research Center. There's a lot of information on pancreatic cancer and
its treatment on their website at http://pathology.jhu.edu/pancreas,
and they run a very active forum
on pancreatic cancer. It's one of the busiest forums on
a cancer topic I have seen on the net.

The American Cancer Society, a voluntary organisation, runs one of the
most comprehensive websites on cancer and cancer-related matters on the net.
It covers most forms of cancer, there’s a wealth of information on cancer and
cancer-related matters, and some forums or discussion boards and two chat rooms.
Their address is www.cancer.org.

To find their information on pancreatic cancer, go to their home page, click on
the link "Learn About Cancer" and find Pancreatic Cancer in the "SELECT A CANCER
TYPE" list, or try this direct link www.cancer.org/cancer/pancreaticcancer/index.

They don't have a forum specifically for pancreatic cancer but they do run a forum called "Rare and Other Cancers" - look for a link to "Discussion Boards" on their Cancer Survivors Network index page who's address as at 6th February 2014 is http://csn.cancer.org.

They have many other resources too for those involved with cancer so it's
well worth browsing their site for additional information and support.

You may find valuable information, and support if you live
in the USA, on the website of PanCAN - the Pancreatic Cancer
Action Network - at www.pancan.org. PanCAN is a US-based
organisation "chartered in February 1999 as the first national
patient advocacy organization for the pancreatic cancer
community."

Numerous cancer-related websites and support groups have a presence on Facebook at www.facebook.com. Try putting pancreatic cancer into the Facebook search window and see what you can find. The closed group "Pancreatic Cancer" www.facebook.com/groups/7630091738/ has over 8,000 members so might be a good one to try joining.

Mailing lists provide another way of getting in touch with
others involved with pancreatic cancer and for sharing
information and support. There is a Pancreatic cancer list -
PANCREAS-ONC The Pancreatic Cancer Support
& Information eCommunity - over 600 subscribers on 6th February
2014 - hosted by the Association of
Cancer Online Resources (ACOR) - to find the list go to
the ACOR website home page at www.acor.org. It may also be worth searching through their index of mailing lists to look for any other lists that may be relevant to your situation.

Here’s some background from their home page:Medlineplus - “A service of the U.S. National Library of
Medicine and the National Institute of Health”“Welcome to MedlinePlus, a goldmine of good health
information from the world's largest medical library, the
National Library of Medicine. Health professionals and consumers
alike can depend on it for information that is authoritative and
up to date. MedlinePlus has extensive information from the
National Institutes of Health and other trusted sources on over
650 diseases and conditions. There are also lists of hospitals
and physicians, a medical encyclopedia and a medical dictionary,
health information in Spanish, extensive information on
prescription and nonprescription drugs, health information from
the media, and links to thousands of clinical trials. MedlinePlus
is updated daily and can be bookmarked at the URL:
medlineplus.gov. There is no advertising on this site, nor does
MedlinePlus endorse any company or product.”

World General Cancer-Related WebsitesOther websites you may find valuable

Below is an annotated list of numerous other websites a person diagnosed with cancer of any kind may find valuable on their journey. This same list appears on the pages for each cancer type on bestcancersites.com.

The United Kingdom website Macmillan Cancer Support at www.macmillan.org.uk
is "The UK's leading cancer information site: your one-stop site with over 6,000 pages of up-to-date cancer information, practical advice and support for cancer patients, their families and carers." (I've borrowed that quote from the former United Kingdom website called "Cancerbackup" which has now been incorporated into the Macmillan website - if you're looking for Cancerbackup on the net it's now Macmillan Cancer Support.)

If you join their online community you can run a homepage and a blog, post photos, and participate in forums, chat and groups.

Macmillan Cancer Support is one of the biggest and most comprehensive cancer websites worldwide and it covers most cancer types. I suggest adding it to your list of reliable sources of information about cancers and their treatment, along with the USA's National Cancer Institute website www.cancer.gov and the American Cancer Society's website www.cancer.org.

If you live in Canada I suggest checking out the Canadian Cancer Society
website at www.cancer.ca
and searching for information and resources relevant to Canada and your
local region. The website comes in both English and French language
versions.

The Irish Cancer Society has a website at www.cancer.ie which includes a message board (forum).

Fatigue is a common side-effect of cancers and their treatments. If you or someone you know is having problems with cancer-related fatigue you may find it worthwhile browsing some of the information and discussion about fatigue due to cancers and their treatments on some of the best cancer websites. And for those who are okay with reading through lots of posts on forums, you may find threads on fatigue with valuable tips from people who are also doing battle with this unwelcome side-effect of cancer and its treatments. The usual provisos apply about forums, such as what works for one person may not work for another, and what doesn't work for one person may work for another.

The following article is the best general summarising article on cancer-related fatigue I've read. If you or someone you may be in a position to assist has issues with cancer-related fatigue, can I suggest quietly reading it through for a summary of what the latest thinking is. You may find information or ideas that are relevant to your situation. The source of the article is the website of the National Cancer Institute (National means USA here) - a USA government organisation and one of the world's best all-cancers websites. The article as at 21st August 2016 is here
If that link breaks as it inevitably will as changes are made to the overall structure of their website, putting fatigue into their search window on the home page should find it. Their home page address is http://www.cancer.gov

Various cancer treatment centres and medical teams around the world have set up websites to provide information on their facilities and services, and they may have quite detailed information about various kinds of cancers and their treatments. If you visit their websites it pays to be aware they are promoting their own particular facilities and treatments. Nevertheless their websites can be valuable sources of information as they are right at the coal face for treatment and research. Two good ones to explore are the Dana-Farber Cancer Institute in the USA at www.dana-farber.org and the Sidney Kimmell Comprehensive Cancer Center at Johns Hopkins in the USA at
www.hopkinskimmelcancercenter.org. You can find a list of National Cancer Institute "NCI-Designated Cancer Centers" in the USA, by going to this page of the National Cancer Institute website www.cancer.gov/researchandfunding/extramural/cancercenters.

Numerous cancer-related websites and support groups have a presence on Facebook at www.facebook.com.

There are long lists of annotated links to cancer websites and organisations, on Nancy Novack's "Nancy's List" website at www.nancyslist.org.

Nancy is a stage 4 ovarian cancer survivor and a clinical psychologist. She says "As a survivor and clinical psychologist, I have had the honor to be invited into the lives of over 500 cancer patients at all stages of their disease. I work with men, women, children, teens, and young adults, from newly diagnosed to those lucky ones in remission, with all kinds of cancer. I also work with their partners, children, loved ones, and caregivers on the journey."

Nancy's site is a must to explore if you're looking for links to cancer sites for information and support for specific cancer types, for general cancer information, and there are other categories too including financial assistance, nutrititon, teens and young adult sites, and a lot more. I haven't had time to go through her lists of links but there are certain to be numerous links there that aren't on my pages.

Cancercare is a large USA-based organisation "that provides free, professional support services for anyone affected by cancer." On their website at www.cancercare.org you can find some information resources, advice on such matters as financial assistance, and counseling services (online, telephone and face-to-face). There are also some online support groups or forums.

Websites created for adolescents-teens
and young adults with cancer

There are a small but growing number of websites created specifically for adolescents-teens and young adults with cancer.

If you're in one of these age groups and you've been diagnosed with cancer, I suggest making the StupidCancer website of the I'm Too Young For This! Cancer Foundation at www.stupidcancer.org
one of your first ports of call, exploring the site, and checking out their comprehensive list of other cancer-related internet resources for adolescents-teens and young adults.

Look for the heading "How Can We Help You [Resource Directories]" for links to a wide variety of resources relevant to young adults with cancer.

And they've recently opened a group of forums (message boards) - there's a link to the forums on their home page or try this direct link http://forums.stupidcancer.org

You can also check out The Stupid Cancer Show, a weekly radio broadcast: "70,000 young adults (15-39) are diagnosed with cancer annually; one every 8 minutes. This is not OK! The Stupid Cancer Show is an award-winning international talk radio webcast giving voice to this lost generation ...". The direct link to it is http://www.blogtalkradio.com/stupidcancershow

I'm Too Young For This! also has a presence on several social networking websites including Facebook.

The Foundation and website is the creation of concert pianist and composer Matthew Zachary who at the age of 21 was diagnosed with brain cancer. Not only has he continued his musical career since his diagnosis but he's turned some of his creative energies to developing the I'm Too Young For This! Foundation and website as a "...survivor-led advocacy, support and research organization working exclusively on behalf of survivors and care providers under the age of 40".

Here's an estimate given on the I'm Too Young For This! website of the numbers of people in the adolescents-teens and young adult age groups affected by cancer in the USA alone. You can multiply these figures by twenty to get an idea of the numbers for the entire planet. "... there are (in the US) in excess of 1,000,000 young adults aged 15-39 currently
living with through and beyond their cancer diagnosis and treatment. This statistic also includes long-term survivors of childhood cancer. Furthermore, if you add adults over 39 who were diagnosed as young adults or , we're looking at nearly two million people. ... But wait! There's more! Survivorship is not just about the patient! Caregivers matter, too! So, if you now account for young adult spouses, siblings, children and parents, we're pretty much talking eight figures of people (>10,000,000)."

So if you're in the adolescents-teens or young adult age groups and you've been diagnosed with cancer at some time in your life, you aren't alone!

Planet Cancer is a USA-based organisation and website for young adults with cancer. It was founded in 1995 by Heidi Adams, Robin Blue and Paul Cox who were all wrestling with cancer in their twenties at the time.

Reducing the isolation many young adults with cancer feel is a key aspect of Planet Cancer's mission. They provide information on various ways for young adults with cancer to connect with each other, including PC Re-Orientations and other retreats in the US, networking groups, one-to-one support, and events. To find this info, look for the link to "Connect" at the top of the Planet Cancer home page at http://planetcancer.org.

Planet Cancer has recently launched a social networking section of their website for young adults with cancer, at http://myplanet.planetcancer.org. It's already become popular - not surprising as it's running on state-of-the-art software and it's the best social networking website of it's kind I've yet come across.

Members can join groups or form their own groups, share photos and videos, participate in the forums and chat, and run their own blogs.
I counted seven ways to interact on Planet Cancer:
- participate in the Planet Cancer discussion forum
- join groups and post messages on the group walls and forums
- post messages on each others My Page walls
- post comments on members' blog entries
- exchange private messages with your friends
- join in chat sessions with one or more members
- post comments on members' photos

Young Adult Cancer Canada at www.youngadultcancer.ca (formerly Realtime Cancer at www.realtimecancer.org) is a Canadian organisation and website for young adults involved with cancer. It was established in 2000 by Geoff Eaton who was diagnosed in 1998 at age 22 with leukemia.

Among the resources on the website there are many survivor and supporter profiles or stories, news and articles, and a list of the different support groups in Canada specifically focused on young adults. They also run a public education program.
There's plenty on their website that will be of interest to young adults with cancer wherever you live in the world, and to those working to improve services and support for young adults with cancer.

"The LIVESTRONG Young Adult Alliance is a coalition of organizations with the goal to improve the survival rates and quality of life for young adults with cancer between the ages of 15 and 40. The Alliance is committed to promoting research and the investigation of the problem, serving as a voice for the issue and promoting effective solutions."

"We formed the LIVESTRONG Young Adult Alliance with the knowledge that unity is strength - by working together we can raise awareness and effect positive change for young adults with cancer."

The big United Kingdom based website Macmillan Cancer Support at www.macmillan.org.uk has a section on cancer for teenagers including a teens social networking cancer community "Write a blog, chat on the forums, send messages, make friends - you can do all this and much more ...". Look for a link to "Teen info on cancer" at the bottom of their home page or try this direct link www.click4tic.org.uk.

More to Explore (in brief)

Immerman's Angels www.imermanangels.org
"Imerman Angels carefully matches and individually pairs a person touched by cancer (a cancer fighter or survivor) with someone who has fought and survived the same type of cancer (a Mentor Angel). Cancer caregivers (spouses, parents, children and other family and friends of fighters) also receive 1-on-1 connections with other caregivers and survivors. These 1-on-1 relationships inspire hope and offer the chance to ask personal questions and receive support from someone who is uniquely familiar with the experience. The service is absolutely free and helps anyone touched by any type of cancer, at any cancer stage level, at any age, living anywhere in the world." {quote from their website}

The Ulman Cancer Fund for Young Adults www.ulmanfund.org
"...we are working at a grassroots level to support, educate, connect and empower young adult cancer survivors. Since inception in 1997, we have been working tirelessly at both the community level and with our national partners to raise awareness of the young adult cancer issue and ensure all young adults and families impacted by cancer have a voice and the resources necessary to thrive." {quote from their website}

If you explore the websites I've described above, including their links and resources pages, you'll find a variety of other websites and resources relevant to adolescents-teens and young adults with cancer.

She also writes a professional blog "Hope for Cancer: what helps, what hurts, what heals" for CarePages.com here.

The collective experience is so much stronger than the experience of any one person, and Lori has gathered the collective experience of many many people in her book and her lectures and interviews and blog.

The world will be a much better place when we all know a lot more about how to communicate effectively and compassionately about cancer and other serious health issues we will inevitably encounter in our lives.

The website Chemocare.com at www.chemocare.com is described as "designed to provide the latest information about chemotherapy to patients and their families, caregivers and friends. We are here to help by supplementing what you may already have learned from your healthcare professional". If you're involved with chemotherapy either as a patient or as a supporter, caregiver or health provider, I suggest visiting this site and exploring for information that may be relevant to your situation.

There are easy-to-understand sections called "What is Chemotherapy", "Managing Side Effects", "Eating Well During Chemotherapy", "Before and After Chemotherapy", "Complementary Medicine" and "Survivor Experiences".

In the section "Chemotherapy Drugs" there is an A to Z list of chemotherapy drugs which includes detailed information about what each drug is used for, how it's administered, side effects, and how the drug works.

They cast their net fairly widely. They say "Sometimes referred to simply as "chemo", chemotherapy is used most often to describe drugs that kill cancer cells directly. These are sometimes referred to as "anti-cancer" drugs or "antineoplastics." Other chemo drugs such as biologic response modifiers, hormone therapy, and monoclonal antibodies, which work in different ways to treat cancer, are included in this web-site. Today's therapy uses more than 100 drugs to treat cancer."

Chemocare.com is a website of the Cleveland Clinic Taussig Cancer Institute (a cancer hospital in the U.S.).

The website RxList at www.rxlist.com - self-described as "The Internet Drug
Index providing fast, reliable information to both the consumer and the
medical professional" - has information about hundreds of medicinal drugs
and also active forums or discussion boards on the more popular drugs as
well as forums for discussing less popular drugs and alternative therapies.
The link to their forums index page is www.rxlist.com/rxboard.htm.

A good website for finding clinical trials relating to any type of
cancer is the USA Government’s National Cancer Institute site at www.cancer.gov - go to
their home page and click on the link Clinical Trials, or click on this
direct link www.cancer.gov/clinicaltrials.

There's another USA Government website called ClinicalTrials.gov at
www.clinicaltrials.gov
where you can search for trials. “ClinicalTrials.gov offers up-to-date
information for locating federally and privately supported clinical trials
for a wide range of diseases and conditions” and “ClinicalTrials.gov currently
contains approximately 12,600 clinical studies sponsored by the National
Institutes of Health, other federal agencies, and private industry. Studies
listed in the database are conducted in all 50 States and in over 100 countries.
ClinicalTrials.gov receives over 4 million page views per month and hosts
approximately 17,000 visitors daily.”

I suggest starting your search for clinical trials with the National
Cancer Institute site and then trying the ClinicalTrials.gov site. I
don't know if ClinicalTrials.gov includes the same database as the NCI
site but it doesn’t use the same search form so it might turn up something
different anyway. Both sites include trials around the world as well as those
in the USA.

You could also try the “American Cancer Society /EmergingMed Clinical
Trials Matching Service ... This free Clinical Trial Matching and Referral
Service is made available to American Cancer Society visitors through a
collaboration with EmergingMed. ... Fill out one questionnaire and within
seconds you'll know if your profile matches any clinical trials in our
system. The EmergingMed database contains more than 3,000 clinical trials
for treatment, prevention and early detection of cancer.” Look for the link
to clinical trials on the home page of the American Cancer Society at www.cancer.org or try
this direct link http://clinicaltrials.cancer.org.

If you have concerns about fertility in relation to cancer and its treatment,
go to this page www.bestcancersites.com/fertility for links to websites
with information and support on fertility issues.

When regular treatment ends - now what? It can be a big relief when regular cancer treatment finishes but there can be unexpected challenges and difficulties. Suddenly the whirlwind of diagnosis and meetings and chemo rooms and hospital visits and interactions with numerous people comes to an end. Your sources of support may also dwindle as some people may assume your life will fully return to its pre-diagnosis normalcy. If you'd like to read about post-treatment challenges and ways to minimise difficulties, here are links to two discussions on the topic that you may find are valuable reading
www.macmillan.org.uk/Cancerinformation/Livingwithandaftercancer/Lifeaftercancer/www.cancer.gov/cancertopics/coping/life-after-treatment/.

NORD - the National Organisation for Rare Disorders - on their website
at www.rarediseases.org
has a database of rare disorders including many rare cancers. The database
gives a list of alternative names for each disorder, some basic information
about the disorder, and a list of organisations related to that disorder.

Daily Strength at www.dailystrength.org is a new website devoted to hosting support communities "for all health issues & life challenges". They say "DailyStrength was built to enable people facing life challenges to: a) simply and easily communicate their progress with friends, family, supporters, and have those people respond with encouragement and help. b) find others facing the same circumstances, and exchange experiences, treatments and even hugs within a safe community setting." Currently there are thirty-eight support communities for different kinds of cancers (including some poorly represented elsewhere on the internet), and communities for many other health issues you may be interested in such as lymphedema and fertility matters. The website is well set out and participation in communities is simple. You can post messages, and keep a journal and upload photos and videos if you wish.

There are links to nutrition and excercise guidelines on this webpage
nutrition
and excercise guidelines. It says in part "It would be pretty safe
to say that the basic principles of healthy diets and good excercise are
now well understood by scientists, and the information is available in the
form of easy to understand nutrition and physical activity guidelines on
the internet and in print. If we want to get our general eating and excercise
habits up to world's best practice for humans going about their everyday
lives on planet Earth, we can do it using these guidelines, adjusting the
information to suit our particular circumstances."

For anyone considering trying an alternative treatment for cancer (one
that is not mainstream medicine and scientifically demonstrated to be
safe and beneficial) the website Quackwatch has a very good section on
their site called “A Special Message for Cancer Patients Seeking "Alternative"
Treatments”. It will help you decide whether an alternative treatment you
are considering is safe and might be beneficial in some way, or whether
it might be unsafe and/or fraudulent. The direct link is www.quackwatch.org/00AboutQuackwatch/altseek.html or
you can find the link on their home page at www.quackwatch.org.

The American Cancer Society website has a valuable section called "Complementary
and Alternative Therapies". It's buried deep in their website and difficult
to find - there's no link to it from their home page. Try this direct link
www.cancer.org/Treatment/TreatmentsandSideEffects/ComplementaryandAlternativeMedicine/index or
else put the word alternative into the search window on the home page at
www.cancer.org and
look for a link to the section in the search results. If you're thinking
of trying a specific alternative or complimentary treatment you've come
across on the internet or elsewhere you may find information about it in
this section.

Another website that discusses the subject of alternative treatments
in some detail is the website of the National Center for Complementary
and Alternative Medicine at www.nccam.nih.gov.

The American Cancer Society has a very good information page
giving advice on how to use the internet for finding information on cancer,
and how to determine if that information is reliable. The direct link to it is Cancer Information on the Internet.

The National Cancer Institute also has a good information page on how to determine if cancer-related websites you visit are likely to provide reliable information. The direct link to it is Evaluating Online Sources of Health Information.

CaringBridge at
www.caringbridge.org
and CarePages at www.carepages.com
are two websites that enable you to create your own free personalised
webpages and develop your own internet community for yourself or someone
you are supporting. These websites are very popular and worth checking out
if you or someone you know has been visited by cancer and would like a
rallying place on the internet.

Don't know what a cancer-related word or term means or need to check
spelling? The National Cancer Institute (US) has an online cancer dictionary
with more than 4,000 terms related to cancer and medicine at
www.cancer.gov/dictionary.

Update 10th September 2013 to the next entry - I've checked the link referred to below to the Patient Advocate Foundation several times recently and it's not worked each time, and I've been unable to find PAF elsewhere on the internet. Maybe it's a temporary break - I suggest try the link and see what happens :-)

If you are a US citizen and "you or someone you know needs assistance with their insurer, employer and/or creditor regarding insurance, job retention and/or debt
crisis matters relative to their diagnosis of life threatening or
debilitating diseases", then the Patient Advocate Foundation at
www.patientadvocate.org may
be able to help you. Their mission statement says "Patient
Advocate Foundation is a national non-profit organization that
serves as an active liaison between the patient and their
insurer, employer and/or creditors to resolve insurance, job
retention and/or debt crisis matters relative to their diagnosis
through case managers, doctors and attorneys. Patient Advocate
Foundation seeks to safeguard patients through effective
mediation assuring access to care, maintenance of employment and
preservation of their financial stability."

They can also make available some
valuable resources relating to financial management. "Patient
Advocate Foundation seeks to empower patients to take control of
their health care. Case managers work with patients to discover
local, state, and federal programs that provide assistance for
their individual needs. PAF has produced six major publications,
several informational brochures, and several special sections
devoted to certain health related topics to assist in this goal.
Our case managers have also compiled a list of valuable resources
that address several topics that you may find beneficial" (quoted
from their website).

You might also be interested in
looking at their "Empowering Events & Programs Join
thousands of Americans from across the nation by participating in
PAF sponsored empowering events."

Here's something to smile about I
found on their website - a wonderful piece of roundabout writing:
"Oncologists must become engaged in the financial realities that
patients face in order to insure the integrity of the patient's
future financial stability."

I will add more links here in due course.

In brief: "What is the American Cancer Society Cancer Action Network (ACS CAN)? ACS CAN is the nation’s leading cancer advocacy organization that is working every day to make cancer issues a national priority. Many of the most important decisions about cancer are made outside of your doctor’s office. Instead, they are made by your state legislature, in Congress and in the White House. ACS CAN empowers regular people to be part of the growing national movement that is fighting back against cancer" ... www.acscan.org

The biggest cancer-related organisation in Australia is "Cancer Council Australia" - an umbrella organisation that encompasses a Cancer Council based in each state and territory. The link to their home page is www.cancer.org.au where there is a variety of information relating to cancer in Australia, and links to each state-based Council website.

The state-based Council websites are valuable sources of information about locally-based support groups, and a variety of other services they may offer, such as phone-in support, peer support, and discussion of different kinds of treatments. You can find links to the state and territory Cancer Council sites here www.cancer.org.au/about-us/state-and-territory-councils/. If you are looking for a cancer support group in your area you may be able to locate one by searching on your state or territory Cancer Council website.

The Cancer Council New South Wales runs a large website at www.cancercouncil.com.au
and it's well worth checking out whether or not you live in NSW.

Cancer Connections at www.cancerconnections.com.au is an online community created by Cancer Council New South Wales offering support and information to all Australians affected by cancer.

A feature of the site is their forums (discussion boards) where members can share support and exchange information and experiences. As well as general forums for Australians affected by cancer there are forums specifically dedicated to young adults, survivors, and partners, family & friends.

They've recently launched a Young Adults section of the website which includes "news about upcoming events for young adults with cancer and links to our In Focus topics designed specially for young adults, covering issues like sexuality, nutrition, complementary therapies and treatment side effects".

The website's Resources page details some of the services and resources offered by Cancer Council New South Wales including a confidential support and information service helpline you can access by telephone or email.

The Cancer Institute (NSW) was established in 2003 by an act of parliament called The Cancer Institute (NSW) Act 2003. Some of its objectives as stated in the Act are "to reduce the incidence of cancer in the community ... to improve the quality of life of cancer patients and their carers ... to operate as a source of expertise on cancer control for the government, health service providers, medical researchers and the general community".

For anyone involved with cancer in Australia and looking for information on the internet, whether you've been diagnosed with cancer, or are a medical professional, a provider or a researcher, I suggest visiting the Cancer Institute NSW website and browsing or searching for information that may be helpful to you. Their website is at www.cancerinstitute.org.au and their site map page is at www.cancerinstitute.org.au/cancer_inst/sitemap.html.

They say "The Cancer Institute NSW is Australia's first statewide, government supported cancer control agency." They have developed a Cancer Services Directory which "aims to bring together information on treatment, services and support for patients and their carers". It includes the following publications:
- an online listing of cancer treatment centres in NSW;
- "A-Z Directory of Support Groups 2005 (4.9mb PDF): A list of support
groups operating in suburbs, towns and cities throughout New South Wales
and the services they offer";
- "Accomodation Guide 2005 (636kb PDF): A directory of accommodation
providers near to all the major cancer treatment centres in New South
Wales";
- "A-Z Directory of Cancer Publications 2005: Lists over 200 cancer
publications, a summary of each brochure's contents and details of how
to obtain them."

There are some other publications including The Cancer Prevention Plan ("This booklet provides simple guidelines to help reduce your risk of cancer"), cancer statistics for NSW, the NSW Cancer Plan 2011–15, news releases, and a variety of other information for patients, researchers and health professionals.

They have also developed a website called eviQ Cancer Treatments Online (formerly known as CI-SCaT) here. "eviQ Cancer Treatments Online is a point of care clinical information resource that provides health professionals with current evidence based, peer maintained, best practice cancer treatment protocols and information. eviQ is relevant to the Australian clinical environment and can be accessed free 24 hours a day. eviQ is designed to support a busy work flow in all clinical and geographical settings, allowing rural, remote and metropolitan health professionals, patients, carers and their families access to the same standard evidence based information at all time."

Cancer Australia "is the Australian Government's national cancer agency. We are working to improve outcomes for people affected by cancer, by ensuring that national cancer control, prevention, treatment and care are evidence-based."

"Our role is to provide national leadership in cancer control, and we are doing this by developing partnerships and productive working relationships with other cancer-related organisations, strengthening consumer participation in cancer control, building cancer research capacity, enhancing the education of cancer health professionals, improving access to cancer services and improving cancer data."

Cancer Australia was established by the Australian Government in 2006. You can explore their website at www.canceraustralia.gov.au to see how far they've come and whether they have information relevant to your situation.

The Victorian Government's Better Health Channel website at www.betterhealth.vic.gov.au/ is well-worth exploring for its information on cancers and related issues and links to Australian resources and support. They say "The Better Health Channel (BHC) provides health and medical information that is quality assured, reliable, up to date, easy to understand, regularly reviewed and locally relevant. BHC does not have any advertising or sponsorship and is fully funded by the State Government of Victoria (Australia)."

They've launched a Young Adults section of the website which includes a forum for young adults, and "news about upcoming events for young adults with cancer and links to our In Focus topics designed specially for young adults, covering issues like sexuality, nutrition, complementary therapies and treatment side effects".

'In My Shoes' - The Warwick Foundation - is a non profit charitable organization in Australia focusing on supporting young adults (18-40) years on their cancer journey. It was founded by Samantha Lehmann who lost her 35 year old brother Warwick to cancer in 2005. "In
memory of my Brother who loved music, his friends, his family and his life, I have set up The Warwick foundation, I believe together we can fight and make a difference for young adults on their cancer journey".

The Foundation's website address is www.thewarwickfoundation.org.au, and the Foundation also has a presence on Facebook at www.facebook.com/thewarwickfoundation. Among other activities the Foundation is advocating for a new model of care for adolescents and young adults with cancer, conducting fund-raising events, and connecting young adults on the cancer journey through their 'Find a mate in your shoes' program.

Nikki has started an Australian networking group on the Planet Cancer website called "Australian Network for Young Adults with cancer". Its address is www.myplanet.planetcancer.org/group/australiannetwork. She says "Lets band together and push for better cancer support services in Australia for YOUNG ADULTS up to 40+ years!". She's particularly keen to hear from any young adults in Australia (and their supporters) who've been diagnosed with cancer, about their good and bad experiences of cancer treatment and support services, and their opinions as to how services for young adults can be improved. There's a forum on the group's webpages where you can post your experiences and opinions.

CanTeen is a national support organisation for young people aged 12-24 living with cancer. Here's a couple of quotes from their website:
"CanTeen has nine offices throughout the country, supporting thousands of young people living with cancer. Each Division has an office, dedicated (and very cool) staff, and a hugely important committee driven by CanTeen Members. They each run their own programs and camps, sometimes coming together to run joint activities and providing the opportunity for Members to broaden their peer networks."
"Ranging from week-long summer camps in picturesque locations around Australia for up to 100 CanTeen Members, to locally-based programs focused on the specific needs of different groups of young people living with cancer, CanTeen offers its Members a comprehensive
range of support options. Nothing reduces isolation like spending positive time with someone else living in a similar situation."

Canteen runs a website called “Now What –your space for taking on cancer” at www.nowwhat.org.au, for young Australians 15 to 24 years old. There you can find many stories of personal cancer journeys, some forums, and age-relevant cancer-related information.

You can find further details of their programs and other services they offer at www.canteen.org.au.

The Peter MacCallum Cancer Centre in Victoria has a program for adolescents and young adults with cancer, called onTrac@PeterMac. Their website address is www1.petermac.org/ontrac/. "Any young person undergoing cancer care in Victoria is eligible to access the services of the onTrac@PeterMac program". The age range of those eligible is currently 15 to 25 years.

They say: "In recognition of the unmet needs of adolescents and young adults (AYA)
with cancer, and as part of its commitment to advancing oncology services,
the Peter MacCallum Cancer Centre has pioneered an Australian-first
cancer service for AYA called onTrac@PeterMac. It aims to provide optimal
treatment, care and support for AYA with cancer and ultimately improve survival
rates."

Their website at www.petermac.org has information on their patient care programs for different types of cancer, as well as information on their history, research programs, education programs, nursing services and training, the Peter Mac Foundation, their chemotherapy day unit, medical staff and careers, and various other features that go to make up a standalone cancer centre.

As I am not familiar with the Centre and its services I will quote some relevant info from their website.

"The Peter MacCallum Cancer Centre holds a unique place in the Australian public health system. It is the only hospital solely dedicated to cancer and one of a few outside the US that has its own integrated cancer research programs and laboratories."

"Peter Mac’s main campus is situated in East Melbourne with satellite centres at Bendigo, Box Hill, Moorabbin and the Tattersalls Cancer Centre at Epworth in partnership with Peter Mac."

"The Institute has 151 registered beds, and each year cares for 9,000 inpatients as well as providing more than 200,000 occasions of outpatient care. Peter Mac now has large academic Divisions of Research, Radiation Oncology, Haematology, and Medical Oncology, and an evolving Division of Surgical Oncology."

"It took the concerted efforts of people such as Professor Sir Peter MacCallum and Dr Rutherford Kaye-Scott, to convince the Victorian Government to establish a Cancer Institute in March 1949. The Board met for the first time on 27 April that year and began work on a budget of 3,000 pounds in one room of the former Queen Victoria Hospital in William Street, Melbourne."

"By 1950, an outpatient clinic had been established and named in honour of Professor MacCallum, who had been a tireless advocate and driving force for a centralised cancer institute for Victoria."

In 1986 the name was changed to Peter MacCallum Cancer Institute -'The Peter Mac'. "

"Approval was given in 1990 to move Peter Mac to the site of the former St Andrew's Hospital in East Melbourne, Building of the new clinical block commenced in 1991 and, at the same time, substantial renovations and alterations to the existing buildings were undertaken."

A feature of the Peter Mac hospital is the Peter Mac Patient Information & Support Centre where patients and their loved ones and supporters can find information in a variety of formats about cancers and about support services in Victoria.

"The Patient Information and Support Centre is a quiet, comfortable area where information about cancer and its treatment is available. There is information about support services that may assist you, your family and friends during this difficult time."

"The Cancer Support Nurse or a Volunteer can help you to find reliable, up-to-date and relevant information about cancer, its treatment and related support services."

"The Cancer Support Nurse is available to talk with you, to help answer your questions and can help you find other support relevant to your needs. Please drop into the Centre if you would like assistance; you are also welcome to browse". You can also phone or email if you have any concerns or questions or you would like make an appointment to spend more time with the Cancer Support Nurse.

Available information includes fact sheets, booklets, brochures, dvds, videos, and reliable website information, and there is internet access, a calendar of activities, information sessions, information available in other languages, and an on-line database of Victorian services.

Look for the link to "Patient Information and Support Centre" on the home page of the Peter Mac website for more information about the centre, including its location and hours of opening. If you are attending the hospital as a patient or supporter I do encourage you to visit the information and support centre to see what it has to offer.

The Patient Information and Support Centre. Photo courtesy of Cancer Support Nurse Nicole Kinnane.

The Peter MacCallum Cancer Centre runs a program unique in Australia for adolescents and young adults with cancer, called onTrac@PeterMac - the Victorian Adolescent & Young Adult Cancer Service. The program website address is
www1.petermac.org/ontrac/

They say: "onTrac@PeterMac ... offers specialised, age appropriate care to Adolescent and Young Adult (AYA) cancer patients treated within adult hospitals. The team includes a medical & paediatric oncologist, clinical nurse consultant, psychiatrist, psychologist, social worker, palliative care CNS, education advisor, music therapist, education & training officer and research officer. The service provides:
* clinical care and support ... young people undergoing cancer treatment
* secondary consultation service to healthcare professionals, young people and the broader community
* training, education & professional development program
* medical & psychosocial translational research
* AYA resources"

"Located at Peter MacCallum Cancer Centre, East Melbourne, the onTrac@PeterMac team travel throughout Victoria, to ensure all young people have access to specialist support and advice if required".

"Any young person undergoing cancer care in Victoria is eligible to access the services of the onTrac@PeterMac program."

The age range of those eligible is currently 15 to 25 years.

You can find more information about the onTrac@PeterMac program on their website and there's also a variety of information on the website for both patients and health professionals.

About the patient section of their website they say in part:
"This section of the onTrac@PeterMac web site has been specifically designed for Adolescent and Young Adult (AYA) cancer patients. It covers a range of questions that you may want answered and also some other information that we thought you may find useful in answering questions related to a cancer diagnosis and its treatments".

About the health professionals section they say in part:

"The Health Professionals section of the web site has been designed specifically to assist Health professionals who work with or have an interest in adolescent and young adult cancer care. The information that can be found in this website has come from the knowledge and experience gained from healthcare professionals working in the field".

Lymphedema If you have an involvement with lymphedema you may find the website of the Australasian Lymphology Association a valuable resource. It includes "A public register of lymphoedema practitioners in Australia and New Zealand. These practitioners fulfil the accreditation and registration requirements of the ALA" {quoted from their website}. The web address is www.lymphoedema.org.au.

There's a valuable annotated page of useful links relating to cancer on Denis Strangman's website 'The Canberra One-Stop Cancer Web-Shop' "Dedicated to helping cancer patients and carers in the ACT and NSW Southern Area health region locate reliable web resources of interest to them." Its address is www.hotkey.net.au/~string/listing.htm - scroll down the home page to find the list of links. Some of the links it lists are to Australia-wide and international sites so it's worth
a visit wherever you are in Australia.

"Look Good...Feel Better" at www.lgfb.org.au:
"... a free community service program dedicated to helping women undergoing treatment for cancer. The purpose of the program is to help women manage the appearance related side effects of chemotherapy and radiotherapy, thereby helping to restore their appearance and self image.
Look Good...Feel Better is an initiative of the member companies of the Cosmetic,Toiletry and Fragrance Association of Australia, (CTFA) who established the program in Australia in 1990. Since that time over 32,000 women living with cancer have been helped by the program."

Camp Quality's website at www.campquality.org.au: "Camp Quality is a non profit organisation that is committed to bringing hope and happiness to every child living with cancer, their families
and communities through ongoing quality recreational, educational and financial support programs." To register "You must be between the ages of 0-18 years and have been diagnosed with cancer". ... "Camp Quality is an international charity with the first office being established in 1983 in Sydney, Australia. There are 14 offices throughout Australia covering every state and territory. Over 5,000 families each year are supported by Camp Quality; they participate in our camps and other activities. Nationally there will be approximately 185 camps and recreational activities held in Australia in 2005."

Cancer Council Western Australia (www.cancerwa.asn.au) is offering free Life Now yoga and meditation classes: "Are you or someone you care about living with cancer? We invite people living with cancer, their carers and family members to take part in this free program".

They also offer a free Life Now exercise program. "The program includes a personalised program and admission to 2 classes per week, and requires a 12 week commitment (health permitting). ... The program is free to cancer patients who have undergone treatment within the last two years and their carers. There may be a once off fee for your initial assessment with our qualified Exercise Physiologist, this is dependent upon your GP and private health care fund".

Petrea King on the Petrea King Quest for Life Centre and Quest for Life Foundation
website at www.questforlife.com.au says "Providing services that assist people to reconnect with their spirit and establish peace in their lives has been my passion since my recovery from leukaemia in 1984. Together with a dedicated team of health professionals, we
have been providing services for people living with the challenges of serious, chronic and life-threatening illness, grief, loss and trauma since 1985."
"The Quest for Life Centre was established in its own premises in 1998 in beautiful Bundanoon in the Southern Highlands of NSW, Australia."

Elsewhere on the website it says "The Quest for Life Foundation was established in 1990 by Petrea King to further her work. Since her recovery from leukaemia in 1984, Petrea has devoted her life to counselling people, facilitating support groups, running residential programs and lecturing widely on health and healing."

You can find details of the Foundation and Centre and their upcoming programs on the website, and you can also listen to some of her past radio interviews on the ABC.

The Gawler Foundation was established as a non-profit organisation in 1983 by Dr Ian Gawler following his recovery from bone cancer. "The Gawler Foundation is committed to an integrated approach to health, healing and wellbeing that includes the body, emotions, mind and spirit. We call this integrative medicine. Our mission is to work within a integrative medical framework to provide access to the best possible instruction and support for the mplementation
of self-help techniques."

They run the Yarra Valley Living Centre near Melbourne and offer both residential and non-residential programs. You can read about the Foundation and what it has to offer on their website at www.gawler.org.

Can Assist (Cancer Assistance Network) formerly known as the Cancer Patients Assistance Society of NSW "... helps cancer patients, predominately from rural NSW, by
providing accommodation, comfort, financial assistance and emotional support for patients and their carers."
"For 50 years, Can Assist, the Cancer Assistance Network, has been caring for NSW cancer patients and their families through a network of volunteers and members in 37 Branches across rural and regional NSW. We own and operate three patient care facilities - Jean Colvin Hospital, which is a fully Accredited hospital and located in Darling Point - Sydney, Ecclesbourne which is a bed and breakfast facility for patients and their carers and Lilier Lodge which also caters for cancer patients and their carers and is co-owned with the Cancer Council - located in Wagga Wagga. These facilities are situated close to treating hospitals."
Their web address is www.cancerpatients.com.au.

The Australian website Virtual Cancer Centre at www.virtualcancercentre.com has information about cancers and their treatments, and about drugs used to treat cancers. It's a resource primarily designed for health professionals, but if you are a patient or supporter researching a cancer and its treatments you
may find useful information here. "Established in April 2002 virtualcancercentre.com has been compiled by Australian medical professionals and industry to be a comprehensive online cancer information, news and education knowledge hub ...". The website is part of a larger commercial enterprise Virtual Medical Centre atm www.virtualmedicalcentre.com.

Here's a couple of quotes from their website to give you a flavour of their approach and the services they offer.

"The Cancer Care Centre Incorporated is an innovative, non-profit organisation providing complementary health care support to people affected by cancer - including patients, carers and families. It is the largest complementary health care organisation in South Australia dedicated to cancer. In 2010 an estimated 6,000 individual services will be delivered to people affected by cancer."

"We offer cancer patients, carers and family members a variety of courses, support groups, seminars, counselling, complementary therapies and resources designed to empower the individual to actively involve themselves in the healing process."